Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

I posted last month in the Lymphoma thread about my biopsy results from an inguinal lymph node showing Squamous cell carcinoma....I have just returned from the Cancer Treatment Center of America in Tulsa Oklahoma and found out a lot more information about this...

I know SamQKitty will be interested in my diagnosis because I think she had basically the same thing....

I went to the Cancer Treatment Center (you see the adds on tv..) because I was getting terrible information from my local doctors about my condition. I found the Cancer center website online and they had a live chat - so I contacted them and they were so wonderful! They flew me to Tulsa for a battery of test's and scans to determine just what I had and if it was localized or spread. Thank God it is localized in my inguinal lymph nodes! I would recommend ANYONE with cancer - who is less than satisfied with their current oncologist - or physician - to contact the Cancer Treatment Centers of America! They are wonderful and hopeful people and they have cancer treatment tricks up their sleeves (by way of new machine technology, drugs, etc,) that can literally turn around a hopeless prognosis.

OK - I was diagnosed with Squamous Cell carcinoma - in the left inguinal lymph nodes. I have a mass of nodes that measures almost 5cm. The CT scan showed the mass is pressing against my femoral artery but they are not sure if the artery is actually involved yet. The PET scan showed no other cancer in my body... Right now they are calling it a CUP - but they said they will be looking for a primary site when they go in there to remove the nodes. So far all related areas are showing clear of cancer (reproductive areas and anal tract). These would be the most likely places for a primary site of this type of cancer in these particular lymph nodes.

I am scheduled for surgery in August and after I heal - I will do radiation.
At the Cancer center - I was seen by numerous doctors (all under one big roof) - a Radiologist, surgeon, gynecological oncologist, etc... I underwent PET and CT scans and blood work. The Cancer center obtained my biopsy results from my local doctors prior to my arrival in Tulsa. They all seem to think this is treatable and curable - which is such a relief because if you do google searches for information about CUP - they have some pretty grim news out there!

I'd love for SamQkitty to give me some information about her surgery (if she had surgery) and what her experience with this stuff has been like.

Last edited by DJW; 07-23-2006 at 07:00 PM.
Reason: deleting the smiley - I didn't realize it was clicked on

Oh my gosh, DJW...your case is almost EXACTLY like mine! My tumor was slightly less than 5 cm, pressing against femoral artery, on the left side. The only difference is that my cells were poorly differentiated and had similarities to both squamous and small cell cancers.

And, DJW...this is absolutely the BEST kind of CUP to have. Yes, highly curable. In fact, I belong to another cancer board (unfortunately can't mention it here) that's specifically for CUP, and there are three other people on the board who had exactly the same thing you and I have had...two of them are now 7 and 8 year survivors, and one of them was diagnosed about 4 months after I was, and she is also still alive and well and cancer-free.

The surgery...well, it's surgery, and you'll be sore for a while, but since it doesn't involve the abdominal wall, chest wall, or any organs, it's really not that big of a deal. I didn't even need any major painkillers after the surgery...tylenol was more than sufficient. It felt like I was bruised from the groin to halfway up my side (probably from exploratory probing to make sure the cancer hadn't spread upwards), but it got better each day. It was day surgery, and I went home the same day. Do make sure you've got someone to stay with you for the first couple of days, as you don't feel much like bouncing around, but by day 3 or 4 you should be fine.

In addition to the radiation, you should also have chemo, especially with CUP, since there's no telling where it originated from. You don't want to have radiation over your entire abdomen and pelvis, so you'll need chemo to be sure any stray cells are zapped. Chemo experiences vary widely depending on the specific drugs used, your own individual reactions to them, and how aggressive your doctors are about preventing nausea. Let me know as soon as you've got a plan from your doctors and we can discuss this more.

So glad to hear you had such a good experience at the Cancer Treatment Center. It's always much easier to deal with a major illness when you've got confidence in your doctors.

I think it's incredible that we have almost the same unusual cancer. My doctors are almost to the point of accepting the possiblity that some rogue cancer cell was left over in my body from cervical carcinoma in situ 16 years ago. That cancer was lasered - with wide margins and was followed closely for the past 16 years with no evidence of recurrence. Just to be sure they did a deep cervical biopsy on me last month to check and it was completely clear. (They took a lot of tissue - it hurt like heck!)..

I have had some episodes over the year of boil type pimples on my bikini line and my doctor said it may be a mild case of Hidrentitis Suppurvativa (I probably butchered that name). It was when I had one of these boil outbreaks last fall that the nodes began to swell.. I read recently that people with chronic HS (not going to try it again) have a 50% higher risk of Squamous cell carcinoma! I wonder if there is a connection?

The type of radiation they are going to perform is a new one. It is able to concentrate only on the area of concern so it doesn't mess too much with the good cells... They have this new technology....so I get to skip the chemo. If you look on the Cancer Treatment Center of America's website you will see the new radiation treatments they have available.

I am so relieved that the surgery shouldn't keep me down for very long! The surgeon said he will have me up walking by the next day - (I thought that was crazy - but now - reading what you went through - it makes sense! ) I'm in good physical condition and I'm glad to know where to expect the pain.

You are an angel!

I told the oncologist in Tulsa about your post - having basically the same thing and how it's the best CUP to have and she agreed! She said she expects it to be cured...not just treatable...

DJW,
Maybe it's just me, but I would not be comfortable with not doing chemotherapy. I realize that chemo is no fun, and can have permanent side effects that may even show up years later (so can radiation), but given the uncertainty about where this originated from, I would want to do everything possible to make sure that whatever the origin is, it's zapped, too. Of course, if they are quite certain it's from the HS, then that's a different story, as they will be radiating the area that was affected.

I'm not that familiar with cervical cancer and don't know what types of cells are affected, but.unless the cervical cancer was also squamous cell carcinoma, then I doubt it this came from the cervix.

By the way, some of those awful statistics you may have read on the internet go back years...to the 80's and early 90's, before taxol and taxol-type chemos were in full use. The prognosis for our particular type of CUP is much better now. When I was first diagnosed and researching it, I saw one that said only about 20% of all CUP patients survive 14 months! Scared the living daylights out of me...but it turned out it was a study done in the late 80's. Anyway, the other thing I wanted to say is this...even if statistics say 20% survive x number of years...why not assume you'll be in that good 20%??? That was the attitude I decided to take and, while I'm not saying it helped "cure" my cancer...it sure as heck helped me get through all the treatment! And actually, I do believe that staying positive helps our immune systems fight just about anything.

Ruth

The Following User Says Thank You to SamQKitty For This Useful Post:
Cindy927 (07-24-2012)

Sounds like you're pretty happy with your new doctors - that's great! I'm trying to talk my dad into getting a second opinion, but haven't had any luck yet. I'll have to see if I can find the website for them.

I agree with Ruth... from what I've been able to gather so far (I'm relatively new to this since June this year) that Chemo is almost a given with CUP. They started my dad on it almost a month to the day they removed the tumor in his arm (It took them a few weeks to determine they couldn't find the source).

Good luck with the surgery - keep us posted on your progress.

Lynn

P.S. Ruth... any chance you could give me a hint on how to find the CUP website you were speaking of?

The cervical cancer I had was actually one step before it's considered an agressive cancer. It was still contained in the small area of the cervix and they were able to surgically remove it all with a laser. Cervical cancer is generally Squamous cell carcinoma and is often a result of the HPV virus. (Human Pappilloma virus) I may have spelled that wrong...

I don't know....For me - I was relieved to be able to avoid chemo. I'm sure my own beliefs are completely unfounded - but it seems that everyone I've met with cancer has had it return in other areas after chemo treatment. Now - there could be many factors responsible for this and the chemo did kill the cancers in their original places... None of these people had our type of cancer. Most had lung or breast or esophogus cancers.... Anyway, this is why I'm glad to not have to have it.

The radiation treatment they are proposing to use is very new. It's called Tomotherapy and it targets only the cells that area suspected of having cancer. I'm finding that only one hospital in my state (WA) has this new technology so far. There is a website (Tomotherapy .com) that explains it and shows where to find it in your state.

You are so right about the prognosis for CUP on the internet!! ACK! I cried all night after reading through these sites! It's terrible! If you look further however, you'll find information that states that our kind of CUP - inguinal nodes - only occurs in 1 to 3% of patients. And that it carries a high cure rate.....but you really have to look hard for that revised information.
I also would like a hint about how to find that CUP forum on the net!

DonohueGirls,

I thought the Cancer treatment Center of America was too good to be true and hesitated in contacting them. Now that I've been there and spoke with them, I am so relieved!
When you find their website (type Cancer center of America in a google search) look for their "live chat" button and click it. Someone will chat with you and give you all of the information you need to give to your father so he can make the best decisions for himself. They also list a toll free phone number on the site so you can call them and get info. I did. They were so understanding and I was just venting for the first part of my call! It feels good to get out the frustration! They are so incredibly kind and patient and informative.

Sorry ladies, but we are not allowed to post other web sites on here. If you search the internet for CUP and ACUP (which is adenocarcinoma of unknown primary) you may be able to find it. ACUP is, I think, the older term for this, back when they thought most CUP's were adenocarcinomas.

DJW, I didn't know that cervical cancer is usually squamous cell. That would make me all the more concerned about not having chemo...because if, by chance, this spread from the cervix, it could spread elsewhere, too. Sure, it's true that cancer can return...whether you have chemo, radiation or a combination of both. But one of the main reasons that CUP is more survivable now, especially our type of CUP, is because they use taxol as one of the chemotherapies. Just something to think about.

The Cancer Treatment Center of America sent me a copy of my Ultra-sound, CT and PET scans on one CD/DVD. I told them that I wanted to view the PET scan with the surgeon prior to my surgery next week. (I just wanted to see what they saw) Well, the woman I spoke with at the center asked if I'd like her to send me the CD so I can view it myself at home. She assured me that I could also view it with the surgeon when I come back next week - and maybe I'd be able to better form my questions if I had time to view it prior to my visit. I've never heard of receiving a copy of your scans! Except for a pregancy ultrasound video.... I thought this was so cool!

Anyway - the CD came and it is amazing! It shows split screen with one side the CT scan - showing more detailed images of organs, etc..the other side is the PET scan showing the glowing areas of cancer - they syncronize both sides so you know which part of your anatomy you are looking at.

Once I got past the fear of looking at the "glowing" cancer nodes - I actually felt better - knowing exactly what I'm dealing with inside of my body. One thing I learned - your kidneys and bladder will glow too - even if there's no cancer! This is good to know before you look at a PET scan! It's because they are organs that have a high metabolic uptake of glucose and will usually always glow on the scan. I wonder if they ever can use a PET scan to detect cancer in the bladder or kidneys if they always glow anyway?

So - I saw the nodes. They are pretty big. (I could see the right inguinal nodes which are not involved or cancerous for comparison.) There are several of them glowing in the left inguinal area and look confined to the upper superficial nodes - however, there does appear to be one node that seems lower than the rest. This could be the one the surgeon mentioned as a possible deep inguinal node... Or it could just be an upper node misplaced by all of the swelling and inflamation. He will know when he goes in...

I thought I'd share this with you. I found it fascinating! And it really helped to give me a sense of control over this cancer. I know what it looks like and it's not as scary anymore.

Wow, impressive stuff! I've never seen my PET scan, or even most of my CT scans. Luckily, I've got some really great doctors whom I trust totally, and who tell me everything, but it would be really neat to see it all laid out like that.

Surgery took almost 7 hours and the cancer was extensive but they took their time and got it all!

Once they got inside of my thigh - they saw that the mass had completely taken over my lymph nodes - several groups of nodes in addition to my inguinals. It had also completely invaded a vein and was starting on my Femoral artery. It had wrapped itself around my artery and attached itself to one part. They were able to remove it by delicately cutting out a small portion of the artery and suturing it up. They also found a blood clot at the femoral junction where the invaded vein met the artery...Yikes!

I have stitches from my hip bone to under my thigh...had some staples too. But most are out now. I have one J-P drain still in my leg and a bit of lymphadema but they expect it to go down. They never found a primary - though they checked everywhere.

All in all it was a remarkable surgery and the people at the Cancer Treatment Centers of America were absolutely wonderful!

I have a great prognosis now. I follow up with radiation on a preventative basis just in case there were any microscopic cells remaining. The surgeon is confident that he got it all. He certainly took his time!

Wow, DJW, your surgery was way more extensive than mine, but I'm glad they got it all. How's your recovery coming along? You must be sore as all heck, but I hope it's getting better daily.

Are you going to have the full course of radiation? That is, approximately 5 weeks, 5 days a week? I did that too, and it was the easiest part of the whole thing. Of course, my cancer hadn't spread quite as much as yours, so less area to radiate, but still...shouldn't be too bad as long as they can avoid the bowel and bladder, which they probably can do.

Good to see you back. Will keep the prayers going for your complete recovery/cure.

Wow, DJW, your surgery was way more extensive than mine, but I'm glad they got it all. How's your recovery coming along? You must be sore as all heck, but I hope it's getting better daily.

Are you going to have the full course of radiation? That is, approximately 5 weeks, 5 days a week? I did that too, and it was the easiest part of the whole thing. Of course, my cancer hadn't spread quite as much as yours, so less area to radiate, but still...shouldn't be too bad as long as they can avoid the bowel and bladder, which they probably can do.

Good to see you back. Will keep the prayers going for your complete recovery/cure.

I was shocked at how exentsive this mass was once they got in there! I never felt anything other than the abcessed and swollen nodes on the surface! Cancer is so incredibly sneaky...

The pain I have now is mainly from the J-P drain in my leg. My thigh muscles feel like they want to contract around it and it's a weird feeling. The remaining stitches are holding in the crucial tension area of the incision. The surgeon really tried to keep from having to use a graft for the wound. Feeling is returning to most of my leg - especially when the swelling and fluid go down. I have some ways to go yet though...

Overall - I feel great! Just knowing that that beast is gone from my body!
Thank you so much for your information prior to my surgery! It made everything much less scary! I felt I knew what to expect and it relaxed me!

From another of the "rare" Squamous Cell arcinoma - inguinal nodes with no primary!

I just read your posts with interest--found them when doing a search of squamous cell carcinoma of inquinal lymph node. My daughter, who is 24, had a swollen lymph node removed and much to everyone's surprise it was squamous cell carcinoma. No primary site can be found though she had had precancerous leisons that had been removed with laser surgery. The doctor has recommended removal of lymph nodes and radiation. i have read about the side effects of these treatments and so am looking for personal stories. If you don't mind, I'd like to ask a few quesitons:
1) you both mentioned having lymph nodes removed. Were all of them removed in groin? Were they removed after a PET showed involvement or more as a precaution?

2)Have you had ongoing problems with lymphedema and if so, how extensive?